New German guideline for ME published today

Joh said:
Fatigatio secretly changed their statement ment a second time.

I can reommend to visit the Fatigatio forums to anybody who's still a member and read the chairwoman's latest comment - a real gem. It's now illegal to talk about Edelgard's infamous letter. The sad thing is that they're not joking, they have sued critical members in the past. My hope is that my dormouse arms are too short and tiny to put handcuffs on them.
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What was changed this time?

I would rephrase: they claim its being illegal on its alleged being a private letter. They are probably not joking about trying to legally pursue this, however as long as there is no court ruling I doubt it would be appropriate replicate their use of "illegal", if that word was used.

Sly Saint said:
@Joh and others; just out of interest, how would you feel about Fatigato becoming a member of S4ME?
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I may not be qualified to judge but the last weeks suggests they have little to contribute.
In fact whatever little sense came about in official statements seemed a direct reaction to criticisms stirred up by a certain notorious document.
They do hold conferences but I can not comment on the quality of speakers or content.

Joh said:
We were informed it's illegal to share, link to, cite, send in personal messages or use the PDF-doc. You are now an outlaw in Germany. :p
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Who is "we"? Informed as in contacted by lawyers?

TiredSam said:
Is it common knowledge that Edelgard doesn't even have ME/CFS, but a mast cell disorder?
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Hardly. Interesting suggestion though.
Actually I've come across several patients' claiming mast cell disorders could explain pretty much all ME symptoms including PENE (according to ICC!?), one being a patient of Byron Hyde.

Is there anything supporting such claims?
(I apologize for possible mistakes in quotes, my phone messed up.)
 
YaS said:
What was changed this time?
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I don't have time to check the whole letter (so there might be more), but after I complained that they only wrote "the guideline is not appropriate for diagnosis" on their website, they inserted "and for treatment". Of course it's only on their website and they finally answered my repeatedly asked question and will not issue an official complaint to the AWMF unlike the other two patient organizations (with the very AFME-esque reason, that the guideline is already written and it wouldn't change anything).

YaS said:
I would rephrase: they claim its being illegal on its alleged being a private letter.
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Yes, that's exactly what I meant, sorry, I hoped it was clear that I merely ridiculed it and wrote it tongue in cheek. To make sure I now went back and inserted *she claims*. The word illegal was not used, it was described as "act that violates the law" and "can be sanctioned" (and more in the whole message), "illegal" was my summarized translation.

YaS said:
Who is "we"? Informed as in contacted by lawyers?
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I was joking and "we" meant the Fatigatio forums members.
 
Joh said:
We were informed it's illegal to share, link to, cite, send in personal messages or use the PDF-doc.
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I would like to know those paragraphs and why something like that should be illegal. If as a stranger I come across some documents, of course I share them and I'm allowed to share them if the author/s is identified and if there's no other prohibition statement (copyright or whatever).

My feeling is she doesn't mean copyright, but her "personal" letter, and that sharing and discussing that might be seen as harassment? - Wait, that reminds me...
Apart from that, I had the same thought as @Philipp:

Philipp said:
What also strikes me as interesting is that they apparently think they can declare sharing documents that were made publicly available 'illegal'.
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In my opinion, if at all, the only one who can be made responsible is the one who published the letter publicly for the first time - the DEGAM authors.

Personally, I agree with @Philipp. What I have seen of Fatigatio (starting in 2016) is not very positive. They really don't make the impression of being open-minded and willing to discuss things. Although the basic idea of inviting "opponents" here to have a constructive discussion is good...

By the way, who is Edelgard?
 
YaS said:
Actually I've come across several patients' claiming mast cell disorders could explain pretty much all ME symptoms including PENE (according to ICC!?), one being a patient of Byron Hyde.

Is there anything supporting such claims?
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There is a youtube video by Afrin where he says that MCAS might be a co-disease in ME (i.e. that some people with ME might have MCAS, too). I didn't have the impression he states that MCAS is ME (or that ME is MCAS). There also was the question if hypermobile EDS and MCAS might be somehow connected.

From my personal experience, I'd say there are ME symptoms that don't fit MCAS symptoms (including PEM/PENE/crashs). But that's only my personal view...
 
Inara said:
I would like to know those paragraphs and why something like that should be illegal.
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Not sure if I made my intend clear enough. I wrote my post to ridicule the message, not to claim that it's illegal to talk about the letter.

Inara said:
By the way, who is Edelgard?
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Edelgard Klasing is the chairwoman of the Fatigatio and wrote the infamous letter.
 
Ah, Klasing, that sounds a bell :)

Joh said:
Not sure if I made my intend clear enough. I wrote my post to ridicule the message, not to claim that it's illegal to talk about the letter.
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Yes, I understood. Thank you. :) Still, she should be careful with throwing stuff like that around.
 
Inara said:
There is a youtube video by Afrin where he says that MCAS might be a co-disease in ME (i.e. that some people with ME might have MCAS, too). I didn't have the impression he states that MCAS is ME (or that ME is MCAS). There also was the question if hypermobile EDS and MCAS might be somehow connected.

From my personal experience, I'd say there are ME symptoms that don't fit MCAS symptoms (including PEM/PENE/crashs). But that's only my personal view...
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I came across this:

Innate Immune Changes in the Peripheral Blood of Chronic Fatigue Syndrome Patients: Risk Factors for Disease Progression and Management (pp. 91-130)

from the abstract:
"The concept that chronic microbial infection drives constant
activation of the innate immune system through alterations in the production of innate
immune cells and accompanied by abnormal production of pro-inflammatory cytokines
and chemokines, and that this leads to progressive immune deficiency seen in many CFS
patients has only recently been appreciated. In investigating the distribution of immune
cells in the peripheral blood of a cohort of CFS patients who have an antibody
recognizing the SFFV envelope protein, we discovered profound alterations in the
number and types of cells, particularly in the cells regulating the innate immune system."

https://www.novapublishers.com/catalog/product_info.php?products_id=52282

It is my understanding this means MCAS association with ME would not be causal, but a possible consequence in a number of patients, in line with the retrovirus pathogen theory.

Even confirmed MCAS would not rule out a certain person being affected by ME, in fact I know of a number of people who seem to be dealing with both diagnoses similar to the frequent appearance of MCS in ME sufferers.
 
Would be interesting to dig who funded this organization.
I have the feeling, that like EC was chair of UK and the BPs model was driving the patients organization we will find a similar set up on German.
Which would be amazing piece of information if it ever comes down to demonstrate motive and bad intention from the psys.
 
@YaS, I think it's possible both ways - that MCAS is a consequence of ME and that ME might follow MCAS. I sometimes think MCAS was first in my case, but I cannot know for sure.

@Seven, I think it's realistic to hypothesize a connection between Fatigatio and the German BPS group. There was a document that showed a collaboration with Nix at least at one occasion. Fatigatio denies such connections and always got pretty aggressive if such assertions were made.

@Sly Saint, so they already published those results! That's very good news. I thought it would come later in the year. Thanks for posting!
 
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Joh said:
That would fit the news on their website that they gave 2000 Euro from the donations they received in 2017 to the Charité for CFS-research and 5000 to mastcell research (at a hospital I've never heard of). https://www.fatigatio.de/
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They took down the post after one day (but the donations were already made). Edit: Nope, sorry, the post was just moved: https://www.fatigatio.de/spenden/spenden-fuer-forschungszwecke/

New (really bad) statements from Fatigatio: https://www.fatigatio.de/stellungnahme-zur-s3-ll-muedigkeit/ (6 new documents at the bottom of the page, under the statement from February)
 
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From the link given by @Joh in the previous post via Google Translate:

We would like to emphasize that both in Germany and internationally there are a large number of studies, publications and medical lectures that describe quite a number of measurable abnormalities in the immunological and neuroendocrinological field and in the field of energy metabolism. Unfortunately, these were almost ignored by DEGAM, although we fought for more than a year to ensure that those affected in the future are correctly diagnosed and treated in primary care.
Certainly this is very unsatisfactory because it is now clear that CFS / ME is a severe somatic multisystem disease.
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All I can say is that Fatigato can't keep this position for ever, if the evidence for ME being physiological continues to mount. The evidence is increasingly against them.
 
Thanks @Skycloud!

I think my wording was bad, sorry, the statement itself I linked to is from February (although it is secretly edited all the time) but today they added six new documents at the bottom of the page (under their statement).
 
So...

Fatigatio now published the following under their statement regarding the German Guidelines:
https://www.fatigatio.de/stellungnahme-zur-s3-ll-muedigkeit/


1. General information about DEGAM
https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/00_allgemeines_zur_degam.pdf


2. Apology by DEGAM (declaring they had erroneously published private information)

commented by Fatigatio:
"Unfortunately, the obviously personal mail containing sensitive data was linked and quoted on the Internet, especially in Facebook, and not only misinterpretations but also damage to the reputation and standing of the chairwoman and the association of Fatigatio e.V. were caused."


3. Statement by Prof. Stark
(providing not only backup for Klasing's activation recommendations by stating avoidance leads to bedriddenness and bedriddenness leads to deterioration, he goes further to claim successfully treating bedridden "CFS" patients by activation therapy. He then goes on to congratulate Fatigatio on their tactics in dealing with DEGAM avoiding confrontation.)
https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf


4. timeline of events
https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/03_chronik.pdf


5. Statement on the method report
https://www.fatigatio.de/fileadmin/...mente/04_stellungnahme_zum_methodenreport.pdf


6. Procedure of the change proposals / voting forms
https://www.fatigatio.de/fileadmin/...enderungsvorschlaege_abstimmungsformulare.pdf
 
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So this Prof. Stark claims that he uses passive mobilization and stretching exercises on bed-bound patients, leading to long-term improvements in autonomic dysfunction.
If this is true, I would actually like to see him publish on his work in a more formal manner (unless he has already done so?). If this actually works it would be extremely beneficial for us as it is probably relatively easy to implement and practitioners could be informed on how to do this properly.


He is, however, missing the point why people object to the recommendation of 'activation' if he thinks that an approach like he describes is what is usually done in rehab clinics and other settings to pwME. The point we are making is that we do not want bed-bound people be forced to cure themselves by going for longer and longer walks while being denied the money they need to feed themselves and exposed to psychological and oftentimes physical violence as soon as they fail to be able to go back to work within a few weeks. This is not the same as giving instructions for gentle and maybe appropriate stretching to retain or regain enough function to make it to the bathroom.
 
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